Tuesday, April 26, 2011

A Wise Heart

"So teach us to number our days, that we may apply our hearts to wisdom."

~Psalm 90:12

I began working in hospitals in July, 1999. But the truth is, I have been interested in how we live and how we die for all of my life that I can remember.

I think conservatively, I have been aware (meaning, I was on the unit, in the immediate area) of at least 100 deaths. Not that a tally matters, it's just that in that quantity, there has been an opportunity to observe many different ways to handle an event that will absolutely come to us all. Given this, I have come to believe that there is such a thing as a "good" death.

I have shocked people saying that. Our Western culture believes that death is a battle we must fight, which is sad, because we will always lose. We are not accustomed to the notion that we can can "go gently into that good night." But why not? We celebrate a birth, as well we should, as the beginning of a grand new adventure. I would like to suggest that a death can be the fraternal twin of a birth, if only we are open to it.

How do we become open? It's not what most people look for in our medicalized culture.  It is not a procedure, a new drug, or even an experimental treatment. It begins with acceptance, is guided by love, and is always underpinned by wisdom. It is never about quantity; quality is always the language of openness.

Those are lofty ideals, and I can see how they may not always translate to the everyday matters that concern us when a loved one is sick. I can completely understand that philosophical concepts seem nearly absurd when one is having to make life-or-death decisions for a cherished family member or friend. But that is precisely why these concepts seem absurd; we consider them at the 11th hour. The time to invite grace into our lives is now, right this minute, not at the bedside.

We make room for openness with preparation.  In my experience, much of the sadness and confusion  that accompanies a critically ill person manifests in the decision process.  I have seen such anguish in family members; it's heart-breaking. At first glance, it might very well seem to be mainly about the actual illness, but I will suggest that it really is not. Often the family is upset by having to make choices without information from the person who matters the most. Here lies a loved person, sentinel events are immanent, and the issue at hand is that the next-of-kin does not really know what is the right choice to make.  They never talked about this. It "never came up," or, "we were going to talk about it," but the right time never happened. This is especially true when the patient in question is not old, adding on another layer of despair to losing someone at an unexpected time.

The "good" deaths were the ones where people knew what to do, and then carried out the plans with great love and even celebration. The patient was always a person, and that is something that can get lost in a mountain of tests and futile interventions. The important people people gathered around, they supported each other, and they let their love and their sadness have their space.

When we really love someone, and there's no way to verbally communicate that, actions seem like a wonderful option. A person may not be able to hear "I love you," anymore, but being able to advocate for them seems like an excellent stand-in. Except sometimes the most loving way to help a dying person is to not in requesting more treatment. We have not done a good job in the medical community with this message. Most people see the cessation of treatment as "giving up." It isn't. It is compassion, it is acceptance, and at its highest, it is grace manifested. There is a good reason that we have something called "comfort care," which is designed not to prolong life necessarily, but to be certain that whatever time remaining is as good for the patient as it can possibly be, even if that is at the expense of a few extra hours or days. It is also putting the person before one's own pain and regrets, which is a powerful gift.

When people ask for extraordinary treatment, often they don't know what it is that they are really asking for. It's reasonable that a regular person might not know what the real-life consequences are for some requested interventions. Before asking for something new, it is important to ask how that person might live after it is done. I am not sure that most people understand that sometimes this can mean a permanent relocation to a specialized care home. If that is the case, bioethicist  Dr. Katrina Bramstedt suggests touring a facility where people who have have had the potential procedure live, so that a well-informed decision might be made that seems in accordance with what the patient would want.

Talk to each other. Ask what your family and friends want for themselves, should they be unable to speak. Write it down. An Advance Healthcare Directive is just the place to begin to record this kind of conversation. Keep it where the important papers go, and if you have a regular doctor and hospital, please see that they have a copy too. And most of all, don't forget to have this conversation with yourself. It's the final gift that you can offer to the people who mean the most to you, and stands as an invitation to grace. Number your days, and gift your family with your heart's wisdom.

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